For Him – Or for Me?

Ryan engages in some quirky behaviors. These range from slightly odd to completely inappropriate. The latter call for a different response from me than the former, but they don’t always get one, and I find this one of the most vexing aspects of parenting a child on the autism spectrum.

Here’s what makes it challenging: I find myself constantly questioning my response. Am I asking him to change his behavior for him — or for me?

The answer isn’t entirely straightforward. Both Veronica and I believe strongly that it is important to shape Ryan’s behavior to adhere to social norms as much as possible. It’s not that we don’t celebrate his individuality, but rather that we want to help him avoid bringing unnecessary difficulty upon himself. The tween years are a challenging time for all kids to fit in. If we can help Ryan understand the difference between expected and unexpected behaviors — the language of “social thinking” with which so many autism parents are familiar — we feel believe it will help him see how the world views him, help smooth out some of the social challenges he faces, and open the door to forming relationships with his peers.

The flip side is that we try to recognize some behaviors are beyond his control, help to regulate him, or both. We try to provide him space to engage in behaviors that act as a comfort mechanism as he tries to process and impose order on an imprecise world that does not fit into the well-measured, repeatable and predictable order he prefers.

There is another class of behaviors that present a different challenge for us. These include things he likes to do that are essentially harmless. If they annoy other people, that’s one thing. But if they annoy me because they make him stand out as “different” while remaining harmless, that is where I really struggle to do the right thing.

Sunday, I took Ryan ice skating at the New Jersey Devils practice facility. It was a party for season-ticket holders, sort of an appeasement because the start do the season has been delayed by a labor dispute. Ryan had hockey practice at 6 a.m. both Saturday and Sunday, so he wasn’t sure he wanted to go skating for a third time in one weekend. But I talked him into it — which didn’t require a hard sell. Riley was at a sleepover and Veronica doesn’t really skate, so it was just the two of us. He put on his Devils jersey (I had to talk him out of wearing a Sharks jersey, which would have been one of those unexpected behaviors) and we were off to Newark.

As soon as we hit the ice, Ryan was off on his own, happily turning laps around the rink. Every time I got near him, he would laugh and dart away. At one point he even asked me if he could skate alone. I soon saw why. Since we were at the Devils’ practice rink, he decided to re-enact an entire made-up Devils game — with no sticks, pucks, or teammates. He recreated all the plays, starting at the center ice face off dot, and then skating in on “goal” while doing play-by-play of the action out loud.

This “game” lasted perhaps 45 minutes, and he was having a blast. At first I tried to get him to stop, but I had to think about why. He wasn’t bothering anyone. I watched other people to see if they were watching him. Maybe a head turned here or there, but for the most part, people were too busy taking in the scene, taking pictures with the team mascot, or just trying to stay upright to pay him any attention. I shouldn’t say he wasn’t bothering anyone, because he was bothering me.

But why?

He wasn’t endangering anyone, and for the most part he kept his play-by-play volume under control. He wasn’t being made fun of. Nobody was asking him to stop. And I could tell by his huge grin that he was enjoying himself. So it boiled down to him doing something different, something unexpected, that made him stand out in a way that made ME uncomfortable.

I decided I needed to suck it up and deal.

And I did. I faded into the background to take a few pictures. I got off the ice and had a cup of coffee. I interrupted him once in a while to ask the “score.”

He had a great time. He came off the ice exactly when I told him to. He pulled himself away from his “game” long enough to pose for pictures with the mascot, with me, with me and the mascot. And we both left with a smile.

I haven’t always handled similar situations so well. And other situations aren’t always as clear-cut as this one. Sometimes he is bothering other people or getting made fun of, and I feel I have to intervene. This time it was much more obvious that the right thing to do was allow Ryan the space to be Ryan. Doing anything else would have been unfair to him and would have ruined what was very nice outing.

Yesterday, I put aside the urge to do something for me, and instead did nothing — for him.

Sometimes nothing is the expected thing to do.

Ryan skates while doing play-by-play from his imaginary game.

After the “face off,” Ryan heads up ice.

Ryan cuts in on “goal” and prepares to “shoot”

Ryan managed to pause his “game” long enough to take a picture with N.J. Devil

42 thoughts on “For Him – Or for Me?”

dude. i still fight this on occasion. i hope you show yourself the same respect and patience you show your son, allowing him to be who he is. you’re not autistic. worrying about what other people think and having an innate desire to not stand out is who you are. i hope you don’t fault yourself too much for the occasional misstep, especially when the situation is not only layered in complexity but also emotionally charged.

i remember the first time i let go of my own need for my son to behave typically. we were at a movie. at home and with family it was never an issue but in a crowded theater with only he and i, my own ego appeared. good for you for paying attention to yourself and your motives. makes for an excellent parent, regardless of the child.

Thank you for that. I didn’t beat myself up over this particular incident. It’s more of a day-to-day ongoing struggle, of trying to know where the line is. Of trying to know when to push, and when to back off. Of trying to know how to keep reasonable expectations, for behavior, for achievement, for so much else.

It’s that feeling in the pit of your stomach when you see your child doing something that makes them stand out in a way that makes you uncomfortable, and trying to take the time to process it and analyze the situation instead of just reacting out of instinct.

I didn’t mean the post to sound as if I’m beating myself up over it. It’s more that I realize I need as much as possible to put myself in his shoes and try to understand why he behaves the way he does instead of reacting reflexively all the time.

That is extreemly difficult not to do. Everyone wants a child that “fit in”, but think of all the really neat people that you know that are from the same cookie cutter as the rest of us gingerbreadmen.

I applaud your obvious love of your son, and pray that my mind can work fast enough to keep my own judgement in check, when my son is his age. At almost 3, many of the autism behaviors he shows are still played off by others as typical kid behavior; but that will soon change. I so love the perspective you add to the world, so others like me can use it. Thank you…

I loved this article and how honest you were. It’s hard to admit sometimes that it really is us (the parent) who is the o e being bothered not anyone else. Thank you for sharing this I definitely will share it with my husband, because I know it’s something we have BOTH felt and understand!

Thank you for posting this. As a therapist and a proud sister of a beautiful individual with ASD, I appreciate you sharing your experiences with your son. This story really opened my eyes, and hopefully many others =)

This is a great story to share with the public population who may be “looking” at these behaviors in public places, so that they may understand exactly why a child is acting as they are =)

Great work Dad! You did the right thing. No matter how Ryan turns out; one thing he will be sure of: YOU are there for him! To protect him in the latter year and now. I have a son on the extreme right brain spectrum called ASD: he just sees things different. Thirty or some years ago, I knew a true story about a kid who thinks this way. The world was fun and he was full of confidence because someone told him it is OK to be himself. What he sees predicting the future yet he is the odd kid. He was taken to sit in a class where a private teacher teaches kids how to behave with pretending older student. Yell and you get tape on mouth. Hitting and you will get spank on your palm. He learns fast seeing this not doing the odd things in front of teacher. He became popular as he always tries to make school fun even though he is hyperactive and odd. His first grade teacher took him in as her assistance after he controlled the crowd when she has to step out. One day, she returns to find the whole class putting face down pretending to be asleep and QUIET and that kid was in her chair. He just told them to do so then all the treats on the table for good behavior will be handled to them all when teacher returned (was promised to be given anyway). He went on and struggle to be the trouble maker (class activist) till his Dad put him in the “GATE program equivalent class where he got to play when done with the assigned work. He is lucky to have Teachers that understand like a Dad of a ASD (Right brain-visual-simple-learn big picture first-study review book first before learning the basic). He went on and became a successful doctor and consultant coaching business on how to do things much better when you have someone thinking outside of the box (do things different). I would sell to the Coach to let Ryan to become the assistant coach of the day demonstrating how the plays should go visually for the players. That will build the first confidence stone for him to see there is a value for him to be different!…It will take different time and effort for each of these special kid to be there. SO if the world can be patient on these kids, they can contribute big times to the society because they are simple, kind, loyal, and tend to think for others first. Praise them MORE and put them down less; if they don’t know then coach them. I love what you done for Ryan. Way to go, Friend.

Thanks for such a thoughtful reply. If there’s one thing I want my son to know — one thing I want BOTH my kids to know — it’s that I am there for them. I may not always act in the way they would like, but I act out of love and out of their best interests.

Emily is my 4th child so I have perspective that many parents of ASD children might not. It is hard to stop yourself from intervening but I must tell you I have “typical” children who would, from time to time, display weird behaviors as well. The one difference is that theirs were not as obssessive as Emily’s. If I have learned one thing on this 34 year journey into parenthood it is to forgive yourself and revel in the moment. We all put so much into parenting our ASD children that we feel a personal responsibility for their behaviors….these are things we have no control or responsibility for. I agree with you, as long as he is not hurting himself or others let it go. We often wonder where our Emily goes when we see her pacing and talking to herself in great animation but we also marvel at how well she communicates within these epsiodes and can’t help but think that this “practice” can only translate to better communication in the “world” down the line. These are wonderful and fascinating kids. Enjoy them!

I read this and my heart hurt. I think this is something that all parents feel, they just don”t say it from fear of judgement. You were able to put the feeling aside and allowed your son to be himself and enjoyed a beautiful day together. There is no better gift you could give him or yourself. Awesome!

It’s so nice to see someone putting into perspective what we all feel. I believe parents of typical children feel this at times as well. With 2 young boys on the spectrum, it’s a hard line to walk between doing what’s best for them and doing what’s comfortable for everyone else. My oldest son (6) engages in a lot of comforting behaviors that are anything but for those around him (lots of stimming, loud and repetitive noises) that my soon to be ex-husband was forever yelling at him for. It’s hard to get some people, even when they are “in the know”, to understand that some things are unavoidable. Now my oldest son tells me he’s glad his father doesn’t live with us anymore, because he yelled at him all the time. Kudos to you for leaving your comfort zone to make your child happy, and realizing that at the end of the day, the opinions of those we hold dear are the only ones that matter.

I have been in this exact situation so many times with my son who is now 18 and I could not agree with you more. My son loves to reenact scenes from movies and he has them memorized well. I am at the point with him now that I love to see the big smile on his face when he is ‘there’ – in the movie and so full of joy. I believe it is one of the biggest challenges in raising a child with autism. But the challenge is much more for us (the parents) than it is for our children if we respond appropriately. Who made up all of these rules anyway? I have learned that convention is not always the best way and I take joy from every victory my son achieves because it is an uphill battle for him but God has been faithful to us and I have learned more from him than he ever could from me. Take heart dad – you did an amazing thing for your son!

This post is such a great testament of your incredible love for your son. There were so many lines you used that really hit home with me…

“Sometimes nothing is the expected thing to do.”

“So it boiled down to him doing something different, something unexpected, that made him stand out in a way that made ME uncomfortable.

I decided I needed to suck it up and deal.”

“This time it was much more obvious that the right thing to do was allow Ryan the space to be Ryan.”

My daughter is only four, so dealing with expected and unexpected behaviors is still hard to differentiate whether or not it is just a four year old thing or an autism thing. But more and more as her peers become more socially aware and Cali does not, I can see the unexpected behaviors happening more and more. It’s hard. This was great for me to read. Thank you!!

My 10 yr old son has aspergers and he does the same thing, only with football. He plays, does sports statistics, writes down his fantasy league scores, talks aloud with play-by-play and has the time of his life. Your story resonated with me. Thanks for sharing 🙂

I’ve gotten pretty good at letting go of the “unexpected” behaviors that do no harm, i.e.-twirling in line at Target, “TV talk” recreating movies/shows to no one in particular, fiddle toys. It’s the constant drone (with inflections, though you can’t make out real words) that always has me perplexed. He says it makes him happy, so I try and let him do it to his heart’s content as much as possible. It gets odd looks at the bus stop in the morning, and at the store. But I know how pent up he feels without it, and how hard he works to not do it during school (which he doesn’t-at all). But at the same time I feel I am encouraging it and then it is gets more prevalent and is a constant presence in our lives. At times, it drives one or all of us a little batty, and when someone is sleeping I ask him to whisper it, which he can’t always do. As he gets older (he’s 7 now) will he be able to find an alternative that “fits in” more? Or gain the skills so it can diminish? Should I be working towards those goals. Doing play-by-play when you are on NHL ice sounds perfectly alright to me!

These are such tough decisions. Our kids need these behaviors to regulate themselves. I have always hoped that as my son became more self aware he would be able to curb behaviors to adhere to social norms because he wanted to. It doesn’t always work out that way but it is something that motivates him. He does want to fit in and we are thankful for that.

Thanks so much for your story. Also having a son on the spectrum named Ryan made your story even more meaningful. Being from San Jose, we are also Sharks fans and we both skate in roller hockey leagues. Watching him “fit in” with other typical 8 and 9 year olds on the rink is tough when he wants to do his own thing. You are not alone in your thinking. You are a great dad…my hat is off to you!

Thank you! Keep at it with the hockey. It took some time for my so to assimilate and be still does his own thing at practice once in a while but the coach knows when to steer him back to the herd. A Sharks fan named Ryan? How cool! Now we just need the NHL back.

Thank you for this. It is reassuring to know that other parents of kids on the spectrum second-guess their reactions to their kid’s behaviors as well. When we first had our son diagnosed at age three, the unexpected and bizarra behaviors did not stand out as much then. I mean, he was three, and all three-year-olds are a little crazy, am I right? But now, those mannerisms are much more apparent. He is completely unaware of course that other kids are making fun of him or staring at him, but I am definitely aware. And definitely uncomfortable with it. It is extremely difficult to know when to just let him be or when to step in and try to modify his behavior. Thank you for the reminder that doing nothing is perfectly okay. I came by your blog today through Autism Speaks.

Thanks for reading and commenting. Yes those are the difficult decisions. When to intervene l, when to just let or kids be themselves, when to enforce social norms because the world will not always bend to accommodate them. Good luck to you.

Married father of two, rapidly approaching middle age. Hockey has been a constant in my life since the age of four. I care way too much about most sports -- something that will become evident in these pages -- but I'm learning that some things are more important. My son has been diagnosed with PDD-NOS, ADHD and Asperger's at various points.